echocardiogram revealed<\/a> the infant had pulmonary vein stenosis (PVS), a rare condition where the veins that carry blood from the lungs back to the heart are narrowed.<\/p>\n\u201cWe were told only two other babies in New Zealand had this condition \u2026 and that basically Sophie was too small to have treatment.\u201d<\/p>\n
![\"Sophie]()
Sophie Neho started her life needing a ventilator, before moving on to a CPAP (continuous positive airway pressure) machine (pictured). She’s since improved further and is now receiving oxygen at a high flow rate, which is sometimes varied to a low flow. <\/p>\n
Weekly echocardiograms monitored how much Sophie\u2019s veins were narrowing, before the couple were told on August 8 their daughter was unlikely to respond to treatment.<\/p>\n
\u201cThey told us she was palliative and only had two weeks left.\u201d<\/p>\n
But Sophie\u2019s parents refused to give up.<\/p>\n
\u201cI started googling and looking into Facebook groups and found a mother in Auckland whose son was diagnosed [with PVS] in 2020 \u2013 he\u2019s 15 years old with this condition,\u201d Jackson said.<\/p>\n
She found a cardiologist with PVS expertise at Boston Children\u2019s Hospital who reviewed Sophie\u2019s medical notes and scans, something Jackson claims only occurred after \u201cit took the NICU weeks to send them\u201d.<\/p>\n
![\"Sophie]()
Sophie Neho has pulmonary vein stenosis (PVS), a rare condition where the veins that carry blood from the lungs back to the heart are narrowed.<\/p>\n
The US hospital wanted to fly Sophie to Boston for treatment but Nicu staff said the infant was too unstable, Jackson said.<\/p>\n
She said in response to her international search for a second opinion, Sophie\u2019s Auckland cardiologist asked their manager for a second opinion before telling the couple the manager agreed Sophie would be highly unlikely to respond to treatment.<\/p>\n
But Jackson pushed back, because they didn\u2019t know who the manager was and the response wasn\u2019t in writing.<\/p>\n
\u201cWe eventually got the second opinion back and [they] also recommended treatment.\u201d<\/p>\n
Jackson felt the couple had been brushed off with the original advice.<\/p>\n
\u201cIt was almost like they wrote her off \u2013 we got given a [baby loss memory] book and things to grieve her.<\/p>\n
\u201cIf we didn\u2019t get the second opinion, Sophie wouldn\u2019t be here \u2026 that\u2019s one of the things I think about every day \u2013 how many other families are going through this and didn\u2019t know there\u2019s a second opinion out there?\u201d<\/p>\n
![\"As]()
As Sophie has become stronger, her parents Octaviah Jackson and Reece Neho have been able to interact with her more, including giving her her first high-flow bath last week.<\/p>\n
Health New Zealand leader Dr Mike Shepherd told the Herald that staff were \u201cvery pleased that Sophie is doing well\u201d.<\/p>\n
\u201cWe are extremely supportive of wh\u0101nau advocating for their children\u2019s care and getting second opinions from overseas, especially for rare conditions,\u201d said Shepherd, who is Health NZ\u2019s group director operations for Auckland.<\/p>\n
\u201cWe have full confidence in the skill and expertise of our clinical teams. We recognise that, while the recollection and experience of Sophie\u2019s care journey may vary, we are all working toward the same goal \u2013 the very best outcomes for her and her family.\u201d<\/p>\n
They were happy to have further discussions with Sophie\u2019s family about their experience and \u201copportunities to improve our services\u201d, he said.<\/p>\n
Sophie began treatment last month, with her pulmonary veins ballooned on September 22, followed by an operation to close her patent ductus arteriosus (PDA), Jackson said.<\/p>\n
This usually closed shortly after birth, but if it didn\u2019t it could let oxygen-poor blood move the wrong way and cause heart failure and other complications, according to the Mayo Clinic.<\/p>\n
Sophie\u2019s pulmonary veins will be ballooned again on November 6, a procedure her parents were initially told would need to take place every six to eight weeks, Jackson said.<\/p>\n
There was a possibility the intervals may later increase to 10 to 12 weeks, and a type of chemotherapy is also being administered to limit tissue regeneration that could narrow Sophie\u2019s veins, she said.<\/p>\n
\u201cShe was on a ventilator at the start of her life, and then she got onto CPAP [continuous positive airway pressure]. Now she\u2019s on high flow and she\u2019s doing periods of low flow as well, so she\u2019s not needing much oxygen at all.<\/p>\n
\u201cShe\u2019s doing amazingly well \u2013 she\u2019s surprising everyone.\u201d<\/p>\n
![\"Octaviah]()
Octaviah Jackson and Reece Neho say their “funny, cheeky, strong and determined\u201d daughter Sophie loves looking at books and is \u201cso nosey no doctors could talk about her without her looking at them\u201d. Sophie was born at 24 weeks gestation six-and-a-half months ago and remains in hospital battling complications related to her early arrival. <\/p>\n
They\u2019re also hopeful Sophie\u2019s stoma will eventually be reversed \u201chopefully before she comes home\u201d.<\/p>\n
That date remained unknown, like the prognosis for their little fighter, who now weighs 4.69kg.<\/p>\n
\u201cWe don\u2019t know [Sophie\u2019s prognosis] at the moment. We\u2019re hoping to go [from NICU] to the respiratory ward soon and we\u2019ll probably be making a lot more progress.\u201d<\/p>\n
The Dargaville couple, both 23, have been living in Ronald McDonald House as they stay near Sophie\u2019s side, with ongoing emotional and financial hardship as they spent months away from their community and Neho\u2019s job as a builder.<\/p>\n
\u201cEverything\u2019s been a bit stressful but I guess we\u2019re just trying to stay on top of it. We definitely learnt the hard way by crashing and burning out, but we\u2019re just making a little bit of time in the day just for us to get food or a 10-minute walk just to get out of the hospital.<\/p>\n
\u201cAnd making friends in the NICU has helped a lot because it just makes you understand you\u2019re not as alone as you think you are.\u201d<\/p>\n
Their \u201cfunny, cheeky, strong and determined\u201d girl, who loved looking at books and was \u201cso nosey no doctors could talk about her without her looking at them\u201d, made it all worthwhile.<\/p>\n
\u201cShe\u2019s been really strong throughout this whole thing for such a little person\u201d, said Neho.<\/p>\n
\u201cI\u2019m really proud of her.\u201d<\/p>\n
The little girl they\u2019d at one point picked out a funeral home for had given them the greatest lesson of all, Jackson said.<\/p>\n
\u201cWe\u2019ve learned not to give up. Just take things day by day, and keep fighting.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"\u201cIf we didn\u2019t get the second opinion, Sophie would not be here,\u201d Jackson said. Sophie Neho pictured soon…\n","protected":false},"author":2,"featured_media":99287,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[806,6794,27703,72807,72806,14154,130,5969,72805,111,139,5006,69,6644,3766,64798,4499,412,213,8981,131,61,810,72808,72809,1316],"class_list":["post-99286","post","type-post","status-publish","format-standard","has-post-thumbnail","category-sports","tag-as","tag-baby","tag-born","tag-dargavillebased","tag-defies","tag-give","tag-more","tag-much","tag-neho","tag-new-zealand","tag-newzealand","tag-not","tag-nz","tag-odds","tag-parents","tag-premature","tag-small","tag-sophie","tag-sports","tag-sugar","tag-than","tag-to","tag-up","tag-vow","tag-weighed","tag-when"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts\/99286","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/comments?post=99286"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts\/99286\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/media\/99287"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/media?parent=99286"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/categories?post=99286"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/tags?post=99286"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}